No Cure Always Hope

Thursday, 9 May 2019

Dear Readers,I'm currently sitting here in front of my laptop still buzzing from the weekend. I really have pushed my body to the limits over the last few weekends, as we have been so busy, but I have loved every minute! After a few days of resting from our weekend in Wales, Terry and I had another jam-packed weekend ahead of us, this time the PHA UK 20th Anniversary Celebration Conference.

The conferences are always an exciting time to look forward to as it's a weekend dedicated to those with Pulmonary Hypertension. We love listening to the lectures from PH experts and hearing how far PH has come and what is yet to come for the future. It always relieves some doubt and reinstates positivity for the future of Pulmonary Hypertension.

This year, I put myself forward to host a music workshop, so our car boot was full to the brim with instruments, PH stuff and of course Terry's golf clubs (in the hopes he would have time to go and have a round!) After a 4 hour drive due to traffic and accidents, we arrived at Heythrop Park Hotel in Oxford on the Saturday. After a lot of to-ing and fro-ing to unpack from the car to our room, we eventually went downstairs and caught up with the PH'ers who had already arrived.

We spent the rest of the day catching up with our PHriends and meeting new ones too. I was super excited from the minute we got there and I loved being there and having a good catch up with many people. Due to my social media and blogging, I've met many PH'ers online, so I was really looking forward to meeting those I'd spoken to over Facebook and to finally put a face to picture and to see them was great! I've spoken to a few mum's of children with PH, so it was lovely to meet them as well. Terry and I had an early night, as we knew the following day was going to be a busy one.

The Sunday started off with a welcome talk by our PHA UK chairman, Dr Iain Armstrong, followed by a morning of lectures from PH experts. All of these talks were very interesting and were given by Dr John Wort, Neil Hamilton, Wendy Gin-Sing and Carl Harries of Royal Brompton Hospital, Hammersmith Hospital, Sheffield Teaching Hospital and Sheffield Pulmonary Vascular Disease Unit. In the afternoon, 2 more talks were given by Paul Corris and Natalie Doughty, but unfortunately Terry and I were busy and couldn't attend these, however we were busy doing a really fun workshop. These talks will be available to watch online soon via the PHA UK website and I will share the link with you as soon as it goes live.

The music workshop kicked off at 2pm that afternoon and it was lovely to get PH'ers together through the sounds of music, both playing and singing. I wasn't sure who was going to turn up and I had to adapt the workshop to suit the ages of those who attended. We had a fun time of singing songs and playing instruments. Those attended also had the chance to try instruments they've never played before. Some of the PH'ers were already musically talented, so it was great to play our instruments together, whilst others sang along. It's wonderful how whether or not you can play a musical instrument, music can still bring people together and you can still have a good time. As most of you know, I am also a Music Therapist, so I was in my element hosting this workshop.

After the music workshop, I was shattered! It was a great hour of music playing, but I'd put all my energies into making sure it was as fun and as musical as could be, therefore I was zapped! Terry was there to help tidy up and carry the instruments back to the room, where we chilled out until it was time to dress up and go down for the celebratory meal. We sat down with our PHriends and enjoyed a 3 course meal followed by dancing the night away. By the time it hit 11pm, I was falling asleep leaning against that wall, haha, so we went back to our room and I was asleep soon as my head hit the pillow!

Before we went home, Terry and I went into Oxford and had a look around and enjoyed the sights of the beautiful city. I took my mobility scooter, so it was fun scooting around not having to worry about getting breathless. It was a lovely end to a super weekend!

The event was fantastic and as always the PHA UK did a fantastic job of organising another successful conference. All the talks were very interesting and having a weekend of being surrounded by others who have PH is very comforting. It is like we are in our own bubble and when you leave the bubble, you definitely miss it! To be able to talk to others and know that they understand you is a really good feeling. This year there were a few doctors/nurses from the Royal Brompton, so I enjoyed catching up with them!

PHA UK celebrated their 20th Anniversary and it's amazing to see how far they have come. There are around 7000 people with PH in the UK and around 6000 are members of this charity which is fantastic! PHA UK are the only charity who support those with PH in the UK and we wouldn't have the help, support and medication if we didn't have them. They hold us PH'ers together and we are so thankful for everything they do for us! As Neil Hamilton said in his talk, we have lots of medication and treatments now, but it is thanks to the PHA UK and us PH'ers coming together to fight for what we deserve! So congratulations to the PHA UK!!! Thank you for your continuous hard work and dedication to us - here's to the future! We are definitely #strongertogether!

Presentation slide from Neil Hamilton's talk - The PH Jigsaw

We as a PH community will keep on PHighting until a cure is found. We will keep raising awareness and making sure PH is understood by everyone all around the world!!